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MS in all its glory

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    #1712
    eimsRV
    Registered Users Posts: 225 ✭✭eimsRV


    Hi all, I also experience the tingles and random twitches.
    My last MRI was with contrast, and no changes identified.

    I'm changing medication this week as I've been off meds for a few months.
    I'm starting Plegridy tomorrow. Planning a quiet weekend but hopefully will go smoothly.


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    #1713
    Blinder
    Registered Users Posts: 243 ✭✭Blinder


    eimsRV wrote: »
    I'm changing medication this week as I've been off meds for a few months.
    I'm starting Plegridy tomorrow. Planning a quiet weekend but hopefully will go smoothly.

    Best of luck with the new med


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    #1714
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    eimsRV wrote: »
    Hi all, I also experience the tingles and random twitches.
    My last MRI was with contrast, and no changes identified.

    I'm changing medication this week as I've been off meds for a few months.
    I'm starting Plegridy tomorrow. Planning a quiet weekend but hopefully will go smoothly.
    Plegridy is basically interferon, I think. I have a dim view of the interferons with hindsight, but if you show no evident disease activity (NEDA) you probably won't qualify for the likes of Lemtrada and Tysabri.


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    #1715
    eimsRV
    Registered Users Posts: 225 ✭✭eimsRV


    byhookorbycrook wrote: »
    Plegridy is basically interferon, I think. I have a dim view of the interferons with hindsight, but if you show no evident disease activity (NEDA) you probably won't qualify for the likes of Lemtrada and Tysabri.

    Yes you are correct, it is an interferon. I'm diagnosed 2 years and have no new lesions or relapses since diagnosis. Nuerologist has recommended I stay on interferon for now.


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    #1716
    sullivlo
    Registered Users Posts: 9,994 ✭✭✭sullivlo


    Apologies for the the head hi-jack. I searched boards and it just brought up this thread.

    I have a question about the diagnosis of optical neuritis. Last week I saw my GP for a check up with a tummy issue. She saw me stumble and made me do all of the squeezey hand tests. I did okay on all of them. But when she did the eye chart test I had massive blurred vision in my right eye.

    She said I needed either ophthalmology or neurology ASAP and because our health system is so amazing, she sent me to a&e. A family friend is a consultant in the eye and ear so I asked his advice and he said to pop in there to a&e to see what they said.

    They did some tests and weren't happy with my eye (failed the colour recognition test, very blurred vision) so they referred me on to out patients. It was meant to be in November but it has been moved forward to Wednesday.

    I guess my question is what happens in the diagnosis of optical neuritis, is it random eye tests? Or something different? I had an MRI on my brain done a few months ago which came back clear (I was having random bouts of double vision - same eye).

    I'm trying not to read too much about it, but I want to try be prepared for the tests.

    Would appreciate any advice!


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    #1717
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    http://www.mayoclinic.org/diseases-conditions/optic-neuritis/basics/tests-diagnosis/con-20029723
    Might be of some use- haven't heard of an MRI specifically for ON and likewise blood tests for it here though.


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    #1718
    sullivlo
    Registered Users Posts: 9,994 ✭✭✭sullivlo


    byhookorbycrook wrote: »
    http://www.mayoclinic.org/diseases-conditions/optic-neuritis/basics/tests-diagnosis/con-20029723
    Might be of some use- haven't heard of an MRI specifically for ON and likewise blood tests for it here though.

    Thanks. I had an MRI a few months ago for double vision but have developed other symptoms since... The blurred vision is way worse than the double vision ever was, and the hospital the other day weren't happy with my optical nerve. Could be a fun day on Wednesday!


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    #1719
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    Sullivo, ON was my first obvious symptom. Thought I needed a new glasses prescription the few weeks before hand as I could tell my vision wasn't as good but didn't think much of it. Driving home and got double visions so went to GP who sent me to the eye clinic in the hospital.
    Lots of vision exams and tests. General eye exam, some machine with a blue light that touches your eye, a visual field test where you look into a machine and press a button when you see a white dot. Main diagnosis seemed to come when he showed me a red pic on his phone, then asked me to close my good eye and the square was black instead of red.
    They referred me for a brain MRI the next morning (private insurance luckily) and to come back with the disc for review.

    Went the next day the MRI and on to the hospital for more tests.They called a neurologist down to assess me. Neuro exam and history taken (I'd had a bout of numbness and tingling on my left side a few months before but it was passed off as the result of a back injury. Nothing showed on the brain MRI, no obvious swelling on the optic nerve and no lesions.
    Neuro sent me for IV steroids and a full spinal and brain MRI plus bloods to rule out other things like Lyme disease, syphilis etc.

    MRI was a month later and went back to neuro three months later. MRI showed lesions in my spine, none on brain and I was diagnosed with MS that day. The ON resolved itself after about 6 weeks with no lasting damage and no recurrence (that was four years ago)

    ON doesn't automatically mean it's MS but get them to follow up on it.


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    #1720
    sullivlo
    Registered Users Posts: 9,994 ✭✭✭sullivlo


    Okay. Eye doc didn't diagnose ON. Had a range of tests done and there was nothing conclusive. I have to go for some other test with electrodes and then she'll decide if I need an MRI or referral to neuro.

    But the vision in my eye has improved since last Friday, which is good! But it's still not right.


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    #1721
    vmb
    Registered Users Posts: 140 ✭✭vmb


    iirc, optic neuritis is related with MS in less than 50% of the cases.


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    #1722
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    I had it several years before my diagnosis (I didn't know that's what it was at the time, but they confirmed it after the MRI showed a whopping good lesion on my optic nerve).


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    #1723
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    Having a really tough time of it right now; I haven't heard anything back from the MRI I had on the 7th Oct, so I can only assume no news is good news. My car insurance crowd are making me jump through all manner of hoops (new licence, a note from the doctor) before they'll even give me a quote.
    To top it off I had a massive row with my mother last night because she keeps telling me to "stop stressing". Very easy for someone not going through it all to say that.
    Just feeling extremely low right now tbh.


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    #1724
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    Lollipops I'd recommend changing insurer.
    You do need to return your licence as it has to be noted on your licence and you will need a medical before your licence is renewed.
    I got a one year licence for three years and this year the GP allowed a 3 year licence.

    But once it's noted on your licence then the insurance co shouldn't need any more info.


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    #1725
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    ash23 wrote: »
    Lollipops I'd recommend changing insurer.
    You do need to return your licence as it has to be noted on your licence and you will need a medical before your licence is renewed.
    I got a one year licence for three years and this year the GP allowed a 3 year licence.

    But once it's noted on your licence then the insurance co shouldn't need any more info.
    I've already sorted the licence- I should get it next week. I sent them a copy of my current licence with the proof that I have applied for the new one, which they originally told me would be enough. I've met them every step of the way, but the brokerage are just passing all blame on to the insurance company. I just don't have the willpower to go searching for a new one now to be honest! Feeling utterly broken and like it's just one more thing to deal with.


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    #1726
    littlemissfixit
    Registered Users Posts: 318 ✭✭littlemissfixit


    ash23 wrote: »
    Sullivo, ON was my first obvious symptom. Thought I needed a new glasses prescription the few weeks before hand as I could tell my vision wasn't as good but didn't think much of it. Driving home and got double visions so went to GP who sent me to the eye clinic in the hospital.
    Lots of vision exams and tests. General eye exam, some machine with a blue light that touches your eye, a visual field test where you look into a machine and press a button when you see a white dot. Main diagnosis seemed to come when he showed me a red pic on his phone, then asked me to close my good eye and the square was black instead of red.
    They referred me for a brain MRI the next morning (private insurance luckily) and to come back with the disc for review.

    Went the next day the MRI and on to the hospital for more tests.They called a neurologist down to assess me. Neuro exam and history taken (I'd had a bout of numbness and tingling on my left side a few months before but it was passed off as the result of a back injury. Nothing showed on the brain MRI, no obvious swelling on the optic nerve and no lesions.
    Neuro sent me for IV steroids and a full spinal and brain MRI plus bloods to rule out other things like Lyme disease, syphilis etc.

    MRI was a month later and went back to neuro three months later. MRI showed lesions in my spine, none on brain and I was diagnosed with MS that day. The ON resolved itself after about 6 weeks with no lasting damage and no recurrence (that was four years ago)

    ON doesn't automatically mean it's MS but get them to follow up on it.


    Hi Ash, do you mind me asking where on your spine were the lesions. I have no dx, the neuro assured me that MS was ruled out because I had a normal brain and c-spine mri. Suited me to believe that but I keep coming across people/info saying otherwise.
    I haven't been around for a while, I had a few blissful months of normality but a whole assortment of new symptoms hit me in July for a couple of months, and I'm back on the merry-go-round. Waiting on results of dozens of blood tests and for an appointment for nerve study. Would I be right in thinking if something shows up in a nerve study it is more likely to be something else than MS?


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    #1727
    embee
    Registered Users Posts: 2,890 ✭✭✭embee


    I had optic neuritis when I relapsed in May. At that stage I'd been on tysabri a mere ten months. My neurologist said that I shouldn't have been having a relapse only ten months into tysabri so she pulled the plug on the tysabri. The optic neuritis was unbearable! It was the only time I'd ever had it since diagnosis but god, it's awful. They were doing tests on me then for a condition called NMO (neuro myelitis optica). I've had red desaturatipn in one eye and again, they were looking for ophthalmic reasons, but all tests indicated MS lesions on the optic nerve. NMO might be worth looking into?


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    #1728
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    littlemissfixit wrote: »
    Hi Ash, do you mind me asking where on your spine were the lesions. I have no dx, the neuro assured me that MS was ruled out because I had a normal brain and c-spine mri. Suited me to believe that but I keep coming across people/info saying otherwise.
    I haven't been around for a while, I had a few blissful months of normality but a whole assortment of new symptoms hit me in July for a couple of months, and I'm back on the merry-go-round. Waiting on results of dozens of blood tests and for an appointment for nerve study. Would I be right in thinking if something shows up in a nerve study it is more likely to be something else than MS?


    My lesions were c2 and c3 on my spine.


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    #1729
    Twixie56
    Registered Users Posts: 2 ✭Twixie56


    My husband was dx with MS in early 60's. it has been nearly two years now. He was started on Tecfidera and thankfully has tolerated it very well. No relapses, but it took almost 8 months to "recover". We were planning on returning to Ireland, but shelved that until things normalized. Now we are concerned if he can get to see a neurologist to continue with his treatment. Any advice would be greatfully appreciated. Many thanks.


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    #1730
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    Twixie, where will you be living?Presuming you don't have private health insurance?


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    #1731
    embee
    Registered Users Posts: 2,890 ✭✭✭embee


    Are any of ye on lemtrada? I had round one in July and I still feel like absolute rubbish, I feel worse than I did before I got it!


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    #1732
    vmb
    Registered Users Posts: 140 ✭✭vmb


    embee wrote: »
    Are any of ye on lemtrada? I had round one in July and I still feel like absolute rubbish, I feel worse than I did before I got it!

    I had 1st round on September.
    For 3 weeks I was very good, but after that things got worse.

    I think I've had a mild relapse with a new symptom (lazy eyelid). I have appointment in 3 weeks so I will check that.

    It is been a little bit crazy, because my old problems are appearing and disappearing all the time.

    If my next MRI is not good, I have no more options yet, so fingers crossed!


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    #1733
    Salmotrutta
    Registered Users Posts: 99 ✭✭Salmotrutta


    Had MRI couple of weeks ago and follow up with neuro today. 2 years since I last met him. MRI results were great, no new lesions and existing lesions reduced in size. Gilenya appears to be working well. Absolutely delighted, was a bit nervous going in...
    Neuro was saying the newer medications are really reducing the severity of the disease - he used to see some really devastating relapses (mentioned quadriplegia :eek: ) but says he hasn't seen a really bad one for 10 years now, and fewer people progressing to SPMS. Encouraging to hear!


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    #1734
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    That's absolutely terrific!!! I'd say your relief is palpable :)

    Do you mind me asking, what hospital are you attending? I never got any feedback from my MRI a month ago, so can only assume no news is good news :)


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    #1735
    Salmotrutta
    Registered Users Posts: 99 ✭✭Salmotrutta


    PM sent. Yes I was nervous after being called for review after MRI but it was so long since he'd seen me that it was long overdue I guess. Last MRI was over a year ago and I just got a call from the secretary to say everything was fine. I'd say no news is good news alright, if there was anything to worry about they would have to call you or get you to come in.


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    #1736
    failinis
    Registered Users Posts: 1,691 ✭✭✭failinis


    Appointment a few days after I arrive home in December for the neurologist.
    Feeling rather anxious for it. Not MS related though.


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    #1737
    embee
    Registered Users Posts: 2,890 ✭✭✭embee


    Isn't it strange how each consultant and hospital are so different? My neurologist in Beaumont does three monthly MRI scans on me and I see her in Outpatient clinic every six months. When I was in getting the lemtrada I met a woman. Who had been admitted after an MS relapse. Her first relapse in the four years since she was diagnosed. She had been on avonex and not had an mri in four years!


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    #1738
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    I see a neuro in Galway and have a yearly MRI with a checkup every 6 months.
    So Usually I go before Christmas and they order an MRI, When I have it done I call the MS nurse and it's reviewed. So far it's always been fine so I get a phonecall saying same.
    I get another appointment for the Summer where they go through the MRI result with me more thoroughly and then send me on my way until the end of the year again. So I'm back at the end of this month and will probably have an MRI in the new year.


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    #1739
    Salmotrutta
    Registered Users Posts: 99 ✭✭Salmotrutta


    I was having more regular MRIs and would just get a call afterwards to say everything was good. My neuro is happy now for me to have annual MRI as the condition seems to have stabilised, touch wood. The fact he's not calling me for appointments every 6 months, which I would have to pay for as it's private, is kinda reassuring that a) he's happy with my progress, and b) he's not the kind to fleece people by calling them back for unnecessary appointments.


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    #1740
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    Our neuro is at every Tysabri infusion so we see her once a month. As I am JC+ I am MRI-ed once every 6 months.


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    #1741
    LegacyUser
    Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    Hi,

    I was wondering if anyone could get me an idea of how long it takes to get lumbar puncture results? Booked in for one on Dec 16th (a Friday) and was wondering if there's any chance of having the results before Xmas given how close it will. I will of course ask on the day too but thought I'd get an expectation in advance to prepare myself for the possibility I'll be waiting on the results over Xmas. Having the procedure in the Galway Clinic. Thanks.


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